Participatory research with adults with Asperger's syndrome: using spatial analysis to explore how they make sense of their experience.

Abstract:

This thesis explores participatory research involving the author and a small group of adults with Asperger’s syndrome, as co-researchers. The research was based on the assumption that people with Asperger’s syndrome think differently from neuro-typical people (people who do not have Asperger’s syndrome or autism). It is not denied that people with Asperger’s syndrome have difficulties, but the thesis argues that these are caused by living in a world which is dominated by neuro-typical people who do not understand or allow for the differences that people with Asperger’s syndrome have. The research is based on the assumption that adults with Asperger’s syndrome are able to be co-researchers and that part of the task of the researcher and the co-researchers was to find a way of working together that was enabling to all involved in the research.
The original aim of the research was to ascertain what kind of service provision adults with Asperger’s syndrome wanted and this formed the research question: ‘What support do adults with Asperger’s syndrome want?’ The findings of the research challenge traditional notions of support as the emphasis is taken away from support to consider forms of understanding. It has resulted in the proposal of a new way of understanding Asperger’s syndrome. It proposes models for understanding how people with Asperger’s syndrome and neuro-typical people relate to each other. These models challenge a currently prevailing deficit-based understanding of Asperger’s syndrome.
The author and the co-researchers worked collaboratively to design research tools, collect and analyse data and disseminate findings. The data was collected from other adults with Asperger’s syndrome who took part in questionnaires and then different adults with Asperger’s syndrome who took part in a focus group and individual interviews.
The work was informed by the literature on spatial understandings of how society is ordered. The thesis uses this spatial understanding as a way of analysing how people with Asperger’s syndrome are regarded in a society which is dominated by people who are neuro-typical. Insights from a spatial understanding are also used to consider the process of the research, including an application of the social model of disability to participatory research involving adults with Asperger’s syndrome. My original contribution to knowledge is that I have demonstrated that people with Asperger’s syndrome have the potential to work in group situations on a complex piece of research. I have shown that people with Asperger’s syndrome are able to make a significant contribution to the understanding of how people with Asperger’s syndrome and neuro-typical people relate to each other.
I have also demonstrated how a non-disabled researcher and co-researchers with Asperger’s syndrome can work together and devise working methods which are enabling. In the words of the thesis, I have demonstrated how an ‘autistic research space’ can be created. This thesis discusses the role of the neuro-typical researcher in the creation of this research space. The research is regarded as having been co-produced and the meaning of this is explored.
The thesis discusses the nature of participatory research using a spatial understanding. Emancipatory research is said to be based on the social model of disability, where non-disabled researchers are not involved. I have shown that participatory research can also be based on the insights from the social model of disability and achieve the outcomes required for emancipatory research. I have proposed a framework for planning and analysing participatory research.
Perhaps the most significant contribution to knowledge is the new way of understanding Asperger’s syndrome proposed by the research which challenges the more traditionally accepted deficit based model.